Share Your Story: Celiac Disease, Alice Bast’s Story

Alice Bast, Founder of Beyond Celiac

Alice Bast always says the day she was diagnosed with celiac disease was the best day of her life. That’s because it’s the day she got her life back.

In hindsight, Alice believes a vacation to Mexico played a role in triggering the disease. Celiac disease is a genetic condition, so you must have a genetic susceptibility in order to develop the disease. But there’s something else needed to trigger the onset: an environmental factor, usually some type of emotional or physical stress. After being treated for the parasite, Alice never returned to full health.

In the 1980s, Alice and her husband started their family. Alice’s first pregnancy was uneventful and she gave birth to a healthy baby girl. Her second pregnancy, though, was nothing like the first. Early on, severe fatigue set in. Alice found herself constantly weak and not sleeping enough, as severe diarrhea, joint pain and migraines kept her awake through the nights. Two weeks before her due date, Alice delivered a full-term stillbirth, a daughter she and her husband named Emily.

Over the years, Alice went on to have multiple miscarriages before finally delivering her youngest daughter, who weighed only 2 pounds. For the next eight years, Alice visited an incredible amount of doctors – 22, to be exact. No one could identify the source of Alice’s ailments. At 5’9″, she had wilted to a mere 105 pounds and was convinced that she was dying. Her mother died of pancreatic cancer, and Alice feared that she too had cancer somewhere. Deeply distressed over her ever-declining health, Alice wondered if doctors would find the cancer and be able to treat her in time.

It wasn’t until talking to a family friend, a veterinarian, that Alice realized that what she was eating could be the problem. Her friend mentioned celiac disease and said that animals can have reactions to wheat. Still on her quest for answers, Alice visited her 23rd doctor. “Here’s my arm,” she remembers saying. “Give me the blood test.”

Sure enough, the results came back positive. After eight years of struggling, Alice had her answer: celiac disease.

Alice’s story only begins with her diagnosis of the serious genetic autoimmune disease. While she enthusiastically accepted her diagnosis and began the difficult task of eating gluten-free, she still wondered how many people were out there suffering for years without answers as she did. Alice’s illness remained undetected for years because awareness among medical professionals is extremely low. She also did not fit the description of the “typical” person with celiac disease – she wasn’t short, wasn’t a child, and she looked “fine.” Determined to not let others suffer as she had, Alice founded Beyond Celiac, then known as the National Foundation for Celiac Awareness (NFCA).

Today, Beyond Celiac inspires hope, accelerates innovation and forges the pathways to a cure. Learn more about the important and influential work of Beyond Celiac here.